Further update to hospital stay: Good morning, all... - PMRGCAuk

PMRGCAuk

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Further update to hospital stay

Feathercraft profile image
2 Replies

Good morning, all.I'm checking back in to this wonderful community to give a quick update as to where I am with my fatigue and subsequent treatment plan. I am told that I do not have straightforward GCA by my doctor and they're looking into Cushing's Disease. I have to come back down to 10mg by 5mg a week and stick there. (Or then nearest I can get to 10mg to function). In the meantime, appointments are being made to an endocrinologist (Lord knows how long this will take). I have tapered to 28mg today, and will keep slowly going down 1mg a day until I get to 10mg. I have gone from 4mg, pre hospital visit up to 30mg in approximately two weeks, due to being very poorly. To add to this I insisted that I submitted a stool test as my whole stomach and bowl areas were extremely inflamed and terrible. Had been for a long time. The result was that I have Helicobater Pylori. I believe I've had this for a very long time. I am undergoing the antibiotic treatment now. All this aside, I have a serious question about the amount of adrenaline in my body. I am EXTREMELY fraught and artificially angry permanently, without due cause. This is not psychological because my personality is calm and stoic. This has been going on for many moths now. My body just can't rest. This adrenaline has taken over. This is the worse I have ever been. I just wanted some advice on how to get rid of some of this cortisol. I shake and my jaw quivers if i speak for too long. I really don't know who else to ask.

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Feathercraft
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PMRpro profile image
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You can't - they are looking at Cushing's disease which means they are looking for the source of the cortisol that is causing it. You have to rely on them for the moment while they investigate.

However - you say you were on 60mg pred for 8 months - that alone would make you suffer those symptoms. it is a massive dose of pred and I can only wonder what your doctor was thinking of. That causes Cushing syndrome - it is an external source of corticosteroid which, in excess, leads to patients developing signs of Cushings. Normally that would suppress your body making cortisol but frm what you say it hasn't.

Once you reduce the dose of pred things should improve but the only way you get anywhere near that is to reduce the dose of pred you are taking. Nothing else.

Feathercraft profile image
Feathercraft in reply to PMRpro

Thank you, PMRpro. I suspected there would be nothing I could do in this situation. Its absolutely horrendous. I'll try to ride this out without going insane. Just have to get lower and pray to God they help me with this. I'm feeling so desperate. I appreciate your help 🙏

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